Wow, it has been a
really long time since I’ve posted anything on here. I usually have a lot of ideas of things to write but either I forget them before I have a chance to write anything, I start writing and don’t get anywhere, and/or I’m just too tired to type anything. But now I’ve been wanting to write something for a few weeks and actually started writing a couple of times but I only get a few sentences written before I either give up due to fatigue and brain fog or I just don’t know what to write next. It’s also hard for me to write things for this site without having them turn out sounding depressed or negative these days. I’m not sure why that is but I’ll try to explain what’s going on with me which may help to explain more of the lack of blogging. So bear with me as I try to write some of what is on my mind.
The topic I have tried writing about a few times in the last few weeks is essentially this: Am I really that much “better” or am I just kidding myself? This has been on my mind a lot as I’ve been thinking about how I’m feeling lately and trying to compare it to how I was feeling a month ago, six months ago, a year ago, five years ago, etc. When I try to do these comparisons, I’m just not sure how much “better” I really am. I’m definitely better in some areas than where I was a year ago when I was having (almost) daily high fevers and just basically getting sicker and sicker which resulted in a 10-day hospitalization in November. But that was from a line infection (in my port-a-cath) and as far as my “normal” health stuff goes, it’s hard to tell where I am compared to a few years ago. And it makes me wonder how much the treatments I’m on are going to do as far as
permanent recovery. By permanent I don’t even necessarily mean that it would last forever, but just the kind of recovery or remission that would allow me to stop the treatments and remain stable for longer than a month before going downhill again.
I’ve written a lot about the difficulties of dealing with chronic illness for such a long time and the kinds of struggles that go along with it. There’s so much to deal with – the treatments, IVs, pills, doctor’s appointments, spending whole weekends (or longer) in bed resting trying to regain some energy and strength, worrying about what might be going on that hasn’t been identified yet, etc. It’s hard and it wears you down which I think is just to be expected. You can’t deal with all of this and be positive all the time. You’re going to have break-downs, you’re going to be depressed sometimes, you’re going to be angry at the world, you’re going to be mad and frustrated at your body, and you’re going to lash out sometimes at people who just don’t “get it” (and some who don’t seem to even try). There are days when all I want to do is throw out all the medical stuff, cancel doctor’s appointments, and just be free from it all and let the diseases do what they’re going to do. It just gets hard to deal with it all day after day when there doesn’t seem to be an end in sight.
When I saw my PCP/LLMD (Lyme Literate Medical Doctor) in the early spring, I told her that I had a goal to be off of IVs, at least on a daily basis, in a year. This goal surprised her and, although she didn’t outright tell me it was an unrealistic goal, she basically said it’s not that likely to happen but that it’s good for me to have a goal to work towards, “Even if it doesn’t happen.” That was probably four months ago at least and I’m not any closer to seeing that light at the end of the tunnel of being able to stop the IVs. I’ve had to decrease the dose of my IV antibiotic for the summer due to awful sun sensitivity which was frustrating because I was tolerating the higher dose well and was hoping that it might help me see a little more improvement along with an oral antibiotic that was added to my treatment to hopefully get at the Bartonella (another tick-borne disease, also called Cat Scratch Disease/Fever).
At this point I have been on so many different treatments and my options of other things to try are becoming more limited. This is somewhat scary and frustrating because it really makes me wonder if I’ll ever be well enough and have made enough progress to be able to go off treatment. There’s a newer IV antibiotic that I tried at the beginning of this month because I was able to get about a week of it for free through my doctor’s office. I was hopeful about this new treatment because it’s supposed to act in a way that’s different from other antibiotics but after two doses I was feeling so awful from side effects that I was miserable and ended up stopping after just three days. But my doctor still wants me to try to get it covered by insurance and go on it for longer, maybe only doing it three days a week. However, getting it approved by insurance is kind of a long shot. And would it be worth it to deal with all the awful side effects I was having and how sick I felt on it? I don’t know that it would help, but I think I’m at a point where I’m ready to go full force into anything my doctor wants to try because I don’t have a lot of options left.
And then I wonder if we are missing a piece (or multiple pieces) of the puzzle. Are we ignoring some kind of underlying issue that would make a difference to have identified? For a long time, probably since reading much about it and/or meeting and getting to know people who have it, I’ve been suspicious that I have Mitochondrial Disease that just makes everything worse and harder to treat. The pieces seem to fit with this but for some reason I haven’t made the leap to see a Mito specialist…yet. About three years ago I was close to pursuing it but just didn’t. And now, since I kind of have this goal lingering in the future, I’m very close to taking the leap and making an appointment with this doctor. I just don’t want to go through all the annoyance of seeing a new doctor, having to go through all my medical stuff with them, if it isn’t actually that likely that it will be helpful. So everyday I think about it, I go back and forth, and it’s kind of a way of procrastinating. Because the longer I take to decide whether to even make an appointment with this doctor, the longer I can go before having to deal with it. But the thing that is most compelling in my mind that I really do have Mito or something like it is that people I know who have it have wondered if I might have it, too, without me saying anything about my suspicions.
In past blog entries, I’ve also talked about how I’ve found it almost more difficult to be feeling better and able to do more things than to be sick and house/bedbound because at least when you’re really sick and unable to function in the world very well, you know not to expect to be able to go out and do things. But when you’re able to be doing more, you have so much more to lose. I’m not saying it’s worse to be doing better, it’s just hard in a different way.
Okay, I’ve kind of gotten away from the original topic here. Am I really that much better than I was a few years ago? Yes, I’m working. Yes, I was able to live on my own essentially for two years and mostly support myself (except for all my medical expenses and other major, unexpected expenses). But does this mean I’m really much better? Or am I just better at handling the symptoms? Do I just have more treatments that keep me stable? I know that without my IV hydration/vitamins/amino acids (but mostly it’s the hydration, I think) I crash and have a lot of trouble functioning. I know that if I’m off antibiotics for more than a few weeks or a month, I start getting worse. So does that count as being “better” than I was?
I don’t want to rely on IVs of any kind for the rest of my life. I don’t want to be dragging around backpacks of infusions everyday for years to come. If I do have to be on these IVs for a lot longer (as in many years into the future) I just wish I
knew that’s how it’s going to be. I hate the unknown and having very little control over it all.
And the other thing that’s frustrating is dealing with people who really don’t understand what it’s like to live with a chronic, debilitating illness and have to put up with all of this stuff. I just (finally) got out of an apartment situation where my roommate thought she understood much more than she did and jumped to all kinds of conclusions, made all kinds of assumptions, that were wrong. And there are people who see me in little spurts and I think it’s hard for them to see that they are only seeing one tiny little bit of my life. It’s hard enough to deal with all the medical stuff, but dealing with people is sometimes even harder. There aren’t many people who really understand. And they understand because they deal with their own illnesses, their own issues that are so similar to mine but at the same time they don’t presume to know what it’s like to be dealing with my unique issues and I do my best to do the same back to them. I just wish I could be around these kinds of people more often. I wish they didn’t not live so far away from me.
So, you can probably tell I’m struggling with some things right now. And right at this moment I’m struggling to stay awake to finish writing this. I started my long infusion (hydration, vitamins, amino acids – sometimes I refer to it as PPN: Partial Parenteral Nutrition) late today so it’s not going to be done for a few more hours but I’ll probably go to sleep for a while and let my pump wake me up when the infusion finishes. I’m not sure that I ended up writing anything meaningful. I’m not sure that I wrote what I wanted to write. But at least I’ve written something. And maybe now that I’ve written on here again, I’ll keep the ball rolling and keep writing and reflecting. I certainly have a lot of ideas of things to write about, they just somehow seem more interesting and meaningful in my head sometimes.
Yours,
Penguini
